Transcript Perinatal Palliative Care

Perinatal
Palliative
Care
Mike Harlos MD, CCFP, FCFP
• Professor and Section Head, Palliative Medicine, University of Manitoba
• Medical Director, Adult & Pediatric Palliative Care, Winnipeg Regional Health
Authority
Erin Shepherd RN, MN
• Clinical Nurse Specialist, WRHA Pediatric Palliative Care
The presenters have no
conflicts of interest to
disclose
Objectives
• To consider where pediatric palliative care may fit in the
care of those with a potentially non-survivable fetal
condition
• To review considerations for the management of symptoms
in the newborn with an anticipated non-survivable condition
• to review Winnipeg’s experience with intranasal fentanyl in
the palliative care of newborns
• To learn about the overall management of complex clinical
scenarios in perinatal palliative care
WHO Definition of
Palliative Care for Children
• Palliative care for children is the active total care of the
child's body, mind and spirit, and also involves giving
support to the family.
• It begins when illness is diagnosed, and continues
regardless of whether or not a child receives treatment
directed at the disease.
• Health providers must evaluate and alleviate a child's
physical, psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary
approach that includes the family and makes use of
available community resources; it can be successfully
implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community
health centres and even in children's homes.
“Thank you for giving
me aliveness”
Jonathan – 6 yr old boy terminally ill boy
Ref: “Armfuls of Time”; Barbara Sourkes
Meet Matthew…
• Prenatal Dx Trisomy 18
• Prenatal palliative care
consult May 22, 2008
• reviewed potential
outcomes and
approaches
• Induced July 14, 2008
on low-risk unit (LDRP)
• Home within 16 hrs
BACKGROUND
• neonatal deaths remain a reality in health care,
and with prenatal diagnosis a palliative approach
to care can often be planned
• UK Stats:
- 98% of neonatal deaths occur in an NICU
- few are supported to die at home or in hospice
- palliative care is only routinely provided for babies
and children over 28 days old
Potential Palliative Scenarios
 known lethal fetal anomalies; potential need for
aggressive symptom management with noninvasive
routes of administration
 withdrawing life-sustaining treatment
 withholding / non-escalation of interventions
 comfort care during terminal phase of irreversible
organ failure (e.g.. gut, renal, hepatic)… may be
days to weeks
Wilkinson D, Thiele P, Watkins
A, De Crespigny L. Fatally
flawed? A review and ethical
analysis of lethal congenital
malformations. BJOG.
2012;119:1302-1308.
2012 Report On The Ten Most Common Causes of Infant
Deaths In U.S.A. In 2009
Kochanek KD, Kirmeyer SE, Martin JA, Strobino DM, Guyer B.Pediatrics. 2012 Feb;129(2):338-48
Significant potential for anticipating palliative
needs of newborn
WRHA Prenatal and Neonatal Consults
Prenatal Consult Diagnoses 2010-2012
Neonatal Consult Diagnoses 2010-1012
Location of Neonatal Deaths Followed By
Palliative Care – 2010-2012
Potential Roles For Neonatal Palliative Care

Explore potential “what-if” scenarios and inform the discussion
about possible approaches

Regardless of the prognostic certainty or the approach taken,
ensure vigilance towards:
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•
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Comfort of the newborn
Support of family
Support of team
Connections – siblings, other relatives
Legacy/Memory – footprints, photos, etc

Participate in dialogue around difficult ethical considerations

On occasion – consolidate information from multiple involved
specialists; serve as a steady presence in the context of turnover
of attending physicians

Participate in exploration of alternate care settings
Potential Pitfalls Experienced
Through Our Prenatal Involvement
 Assumptions that pediatrics and/or neonatology does
not need to be involved in delivery or in postnatal care
if palliative care involved
 Over-interpreting what the “palliative” label means
about other aspects of care and support for the baby
 Misconception that families can’t change their minds
and opt for aggressive care
Palliative Care… The “What If…?” Tour Guides
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•
“What if…? •
•
What would things look like?
Time frame?
Where care might take place
What should the patient/family expect
(perhaps demand?) regarding care?
• How might the palliative care team
help patient, family, health care
team?
Disease-focused Care
(“Aggressive Care”)
Elements of Neonatal Palliative Care
Best practice guidelines: Palliative care for the newborn in the United Kingdom L. de
Rooy, N. Aladangady, E. Aidoo; Early Human Development 88 (2012) 73–77

Assessment: baby's current clinical state, focusing on pain, agitation,
dyspnea and other symptoms

Communication: verbal/ written communication with parents

Review of medications: stop all medications which do not add to the
baby's comfort, actively treat all symptoms.

Review of interventions: stop all unnecessary interventions and
observations, actively consider interventions which can increase comfort,
e.g. skin-to-skin contact.

Resuscitative care plan: record details of what should, and should not be
provided in case of deterioration

Provision of hydration/nutrition: provide fluids/feeds through the least
invasive route

Communication with MDT

Review: palliative care is a process not an event, review care plans and
adjust as needed

Other care options: consider whether the baby may be best cared for in
other settings e.g. hospice or home.
Approach To Prenatal Palliative Care
Consult

Explore parents’ understanding of condition and potential
outcomes, options for care

If needed, develop an approach to discussing with siblings

Discuss care setting and expectations RE delivery

plan for potential threats to comfort (almost always dyspnea)

Consider pre-drawn medications (fentanyl) for nasal/buccal
administration for possible pain, resp distress, restlessness

Home as a possible care setting if baby survives long
enough

Autopsy/coroner/tissue donation

Bereavement follow-up
By 12 – 24 hours
Explore options for care setting
e.g. palliative care at home?
Next 3 – 4 hours
Feeding/hydration
decisions if not feeding
Next 1 – 2 hours
• Try feeding
• Connections & legacy
Live Birth
Approach to comfort
in first few minutes
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Life-And-Death Decisions?
 In situations where death will be an inescapable
outcome, family may nonetheless feel that their choices
about care are life-and-death decisions (treating
infections, hydrating, tube feeding, etc.)
 It may be helpful to say something such as:
“I know that you’re being asked to make some very difficult
choices about care, and it must feel that you’re having to
make life-and-death decisions. You must remember that this is
not a survivable condition, and none of the choices that you
make can change that outcome.
We know that because of her illness, she is on a path towards
dying. We are asking you to help us choose the smoothest path,
causing least distress for your baby”
Fentanyl
• highly potent opioid – small volumes needed
• lipophilic – absorbed readily through
transmucosal membranes and blood-brain
barrier
• expanding pediatric and adult literature on
intranasal use of the injectable preparation for
pain and dyspnea management
Intranasal Fentanyl
• TMAX 5 – 15 min.
- compare with TMAX of 138 minutes for
buccal morphine
• therapeutic levels reported as short as 2
minutes
• bioavailability 71 – 89%
• not irritating to the nasal mucosa
Intranasal Meds
Drug
Tmax (min)
Bioavailability (%)
11 – 14*
55 – 83
Fentanyl3,7
5
71 – 89
Sufentanil3
10
78
20 – 25
55
20
45
Midazolam1,2
Hydromorphone4
Ketamine6
1.
2.
3.
4.
5.
6.
7.
* Available to the cerebral cortex 2 – 5 min. after nasal use5
P. D.Knoester ; Pharmacokinetics and pharmacodynamics of midazolam administered as a concentrated intranasal
spray.•Reasonable
A study in healthy volunteers;
Br J with
Clin Pharmacol.
2002 May;53(5):501-7
to start
recommended
mg/kg
Rey E. et al; Pharmacokinetics of midazolam in children: comparative study of intranasal and intravenous administration;
•for IV dosing and adjust empirically
Eur J Clin Pharmacol 41(4) 1991; 355-357
Dale O, Hjortkjaer R, Kharasch ED; Nasal administration of opioids for pain management in adults; Acta Anaesthesiol
Scand. 2002 Aug;46(7):759-70
Coda BA, Rudy AC, Archer SM, Wermeling DP; Pharmacokinetics and bioavailability of single-dose intranasal
hydromorphone hydrochloride in healthy volunteers; Anesth Analg. 2003 Jul;97(1):117-23
Fisgin T et al; Effects of intranasal midazolam and rectal diazepam on acute convulsions in children: prospective
randomized study; J Child Neurol. 2002 Feb;17(2):123-6
Yanagihara Y et al; Plasma concentration profiles of ketamine and norketamine after administration of various ketamine
preparations to healthy Japanese volunteers; Biopharm Drug Dispos. 2003 Jan;24(1):37-43.
Foster D, Upton R, Christrup L, Popper L. Pharmacokinetics and pharmacodynamics of intranasal versus intravenous
fentanyl in patients with pain after oral surgery. Ann Pharmacother 2008;42: 1380e1387
MAD300® Device
• Syringe is filled with an extra 0.1 ml medication to accommodate for
device dead space
• our practice is to reuse the device multiple times with the same
patient
• device is cleared with air to restore dead space prior to next dose
• first (and still the only) publication describing the use
of intranasal fentanyl in < 6 months old
•
retrospective chart review examining intranasal
(IN) fentanyl use
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58 consecutive referrals of < 6 months old from
Nov. 2006 – July 2010
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described 11 palliative children for whom
intranasal fentanyl was used… all to relieve
respiratory distress
Patient Age at Death
•
no adverse effects noted (drug-related apnea,
chest wall rigidity)
Intranasal Fentanyl Preparation Prior To Delivery
Based on Estimated Birth Weight
500 – 1000 gm
Based on Fetal Assessment
or gestational age < 27 weeks
> 1000 gm
Based on Fetal Assessment
or gestational age > 27 weeks
1 mcg/dose
= 0.1 ml of 10 mcg/ml
= 2 mcg/kg for 500 gm
neonate and 1 mcg/kg for
1000 gm neonate
2.5 mcg/dose
= 0.1 ml of 25 mcg/ml
= 2 mcg/kg for 1250 gm
neonate and 1 mcg/kg for
2500 gm neonate
• administered q 10 min prn, up to 3 doses within a 30 min
period
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lowest starting dose was 0.24 mcg/kg –
o extremely low birth weight triplet at a time that
our program was just becoming familiar with IN
fentanyl and was somewhat conservative in
prescribing.
•
highest starting dose was 3.8 mcg/kg –
o opioid-tolerant patient on fentanyl 3 mcg/kg/h IV
o venous access was lost at the time of
withdrawal of ventilatory support.
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mean initial dose was 1.3 mcg/kg; median was 1
mcg/kg.
# Doses
•
avg: 4.5
range: 1 – 17
median: 3
mode: 1
•
the newborn who received 17 doses had a
diagnosis of Potter's Syndrome and over 21h of
life experienced episodes of resp distress, for
which clusters of repeated fentanyl doses were
administered with good effect
•
Avg. time from last fentanyl dose until death
was 61 min
Example
 Extremely premature infant with NEC and sepsis, intubated and
ventilated
 Seen by palliative care team in NICU 6 days prior to death, plan for
withdrawal of life sustaining treatment
 IJ line had been running Morphine continuous infusion for one month,
switched to Fentanyl infusion 2 days prior to extubation. Lost IJ line
immediately prior to planned extubation.
 Given 4 doses of intranasal fentanyl. Two doses prior to extubation (32
min and 14 min prior). Two doses given after extubation at 3 min and
then 26 min post-extubation (this last dose was given 81 minutes prior
to death). One dose of Midazolam intranasally prior to extubation.
 Died at 44 days of age in NICU (2 hr + 26 min after extubation)
 Effective in managing respiratory distress – “well sedated and
comfortable” and “Looks settled”
•
in our experience, resp. distress accompanying
progressive resp. compromise is the predominant
threat to comfort in the dying newborn
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no dyspnea assessment tools for newborns… we use:
1. signs of increased work of breathing: tachypnea, nasal
flaring, grunting, use of accessory muscles, chest wall
retractions and
2. evidence of distress: restlessness, irritability, crying
•
Article reviewer comments:
the combination of respiratory rate, accessory muscle
use, nasal flaring, retractions, and subjective
evidence of distress are perfectly reasonable tools
to assess respiratory distress and its resolution in
the neonatal period
Common Concerns About Aggressive Use
of Opioids at End-Of-Life
• How do you know that the aggressive use
of opioids for dyspnea doesn't actually bring
about or speed up the patient's death?
• “I gave the last dose of morphine and he
died a few minutes later… did the
medication cause the death?”
1. Literature: the literature supports that opioids
administered in doses proportionate to the degree
of distress do not hasten death and may in fact
delay death
2. Clinical context: breathing patterns usually seen in
progression towards dying (clusters with apnea,
irreg. pattern) vs. opioid effects (progressive
slowing, regular breathing; pinpoint pupils)
3. Medication history: usually “the last dose” is the
same as those given throughout recent hours/days,
and was well tolerated
Analgesia For Dying Infants Whose Life Support Is Withdrawn
Or Withheld
Partridge JC, Wall SN; Pediatrics 99(1) 1997; 76-79
n = 121 deaths in the context of withdrawing life-sustaining treatment
Methotrimeprazine
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aliphatic phenothiazine
non-opioid analgesic properties – about ½ as
potent as morphine
no resp depressant effects alone, but conflicting
reports when administered with opioids
broad-spectrum antinauseant, with antagonistic
effects at D2, H1, muscarinic cholinergic, and 5HT2
receptors
effect on dyspnea inferred from beneficial effects
found in research into chlorpromazine
potential adverse effects include dystonic reactions,
sedation, QT prolongation, postural hypotension,
lower seizure threshold
Methotrimeprazine ctd
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no literature to guide dosing specifically in neonates
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Oxford Textbook of Palliative Care or Children (2012)
recommends:
o 0.1 mg/kg starting intermittent dose recommended
for nausea in children 2-12 y.o.
o up to 0.4 mg/kg/day by continuous infusion for
nausea in children 1 month – 12 yrs
o up to 3 mg/kg/day by continuous infusion for
sedation in palliative children 1-12 y.o.
•
van der Zwaan S, et al, Additional use of
methotrimeprazine for treating refractory agitation in
pediatric patients. Intensive Care Med. 2012; 38:175-6
o describes using 0.15 mg/kg qid in a palliative 8
month old with pulmonary hypertension
Palliative Care in the Community
 What needs to be considered?
– Family awareness and desire to take child home
 Who is involved?
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Pediatrician / Family Physician
Specialists
Home Care
Palliative Care Team
 What is involved?
– Develop a care plan
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Letter of Anticipated Home Death
Advance care plan with DNAR
discussion of autopsy/tissue donation
anticipate symptoms and evaluate routes of medication administration
– Preparation of family
– Ensure responsiveness and availability at all times